Crohn's disease and ulcerative colitis: diagnosis and long-term care

Being told you may have Crohn's disease or ulcerative colitis can raise many questions at once: what the diagnosis means, how it will be confirmed and how it might affect work, family and everyday life. Both conditions are long term, but with the right treatment and support most people manage their symptoms and live active lives. This guide explains how the two conditions differ, which symptoms to look out for, how they are diagnosed and what good long-term care involves.

What inflammatory bowel disease is

Inflammatory bowel disease (IBD) is a group of long-term conditions in which the intestines become inflamed. The two main types are Crohn's disease and ulcerative colitis. In both, the immune system mistakenly attacks healthy tissue in the bowel, causing inflammation that can lead to lasting damage if it is not controlled.

IBD is sometimes confused with irritable bowel syndrome (IBS) or coeliac disease, because the symptoms can overlap. They are, however, entirely different conditions with different causes and treatments, which is why a careful diagnosis matters.

How Crohn's disease and ulcerative colitis differ

Symptoms to look out for

Symptoms vary from mild to severe and can include:

• diarrhoea, which may contain blood or mucus
• abdominal pain; in ulcerative colitis it is often in the lower left side and may ease after a bowel movement
• a frequent or urgent need to open your bowels, sometimes at night
• bleeding from the bottom
• tiredness, loss of appetite and weight loss

IBD can also affect other parts of the body. Some people have joint pain, sore or red eyes, skin rashes or mouth ulcers, particularly during a flare-up. In children, IBD can affect growth and the timing of puberty.

Flare-ups and remission

Both conditions tend to follow a pattern of flare-ups, when symptoms are active, and remission, when symptoms settle or disappear. A flare-up can last from a few days to several months. Possible triggers include infections, stress, changes to medicines, anti-inflammatory painkillers and, for some people, certain foods, although often no clear trigger is found.

What causes IBD

The exact cause is not fully understood. The immune system plays a central role, and genes appear to be involved. For Crohn's disease, the risk is higher if a close relative has it, if you smoke, after a recent stomach infection or if your appendix was removed in recent years. For ulcerative colitis, a family history and having smoked in the past may increase the risk.

When to seek medical help

See a doctor if you have symptoms that could be caused by IBD, or if you already have a diagnosis and your symptoms are getting worse or treatment does not seem to be working.

Seek an urgent medical appointment if you have:

• black or dark red stools, or bloody diarrhoea
• very severe diarrhoea
• a fever or shivering, or a fast heartbeat
• an inability to pass wind or stool

Seek emergency care if you have severe abdominal pain, bleeding from the bottom that will not stop, large blood clots in your stool, or you are vomiting blood or material that looks like coffee grounds. If you already have a diagnosis and develop a severe flare-up, contact your care team promptly.

How IBD is diagnosed

No single test confirms Crohn's disease or ulcerative colitis. Because the symptoms overlap with other conditions, reaching a diagnosis can take some time. A gastroenterologist usually brings together several types of test:

Blood tests

Blood tests check for anaemia, signs of infection and markers of inflammation such as C-reactive protein.

Stool tests

Stool samples help detect inflammation in the bowel and rule out infections that can cause similar symptoms.

Endoscopy with biopsies

Endoscopy is the most accurate way to diagnose Crohn's disease and colonoscopy with biopsies is also used to diagnose ulcerative colitis. A thin, flexible tube with a camera is used to look at the lining of the gut, and small tissue samples (biopsies) are taken for examination. Depending on your symptoms, this may be a colonoscopy, which examines the rectum, colon and the end of the small intestine, an upper endoscopy, or an examination of the small intestine. Sometimes a capsule endoscopy is used: you swallow a small camera capsule that takes pictures as it passes through the small intestine.

Imaging

Scans such as CT, MRI, ultrasound or X-rays may be added to give a fuller picture of the bowel and help guide treatment decisions.

Treatment: calming inflammation and keeping remission

The goals of treatment are to reduce inflammation, bring symptoms under control and keep the condition in remission for as long as possible. Most people need ongoing treatment, even when they feel well.

Medicines

Several groups of medicines are used, often in a step-by-step way:

• Aminosalicylates reduce inflammation and are used mainly for mild to moderate ulcerative colitis and to help maintain remission.
• Corticosteroids act quickly to settle a flare-up. They are used for short periods and then reduced gradually, because long-term use can cause significant side effects.
• Immunosuppressants (immunomodulators) calm the immune response and help keep the condition in remission.
• Biologic and other targeted medicines block specific parts of the immune response that drive inflammation and are used for moderate to severe disease.

Other medicines may be used to relieve cramps, diarrhoea or pain, or to correct vitamin and mineral deficiencies. For Crohn's disease, a specially formulated liquid diet is sometimes used in place of medicines, particularly for children.

Surgery

Surgery may be recommended if medicines are not controlling the condition, if part of the bowel is badly damaged, if symptoms keep returning or if complications develop. In Crohn's disease, the damaged section of bowel can be removed and the healthy ends joined, although the condition can return elsewhere. In ulcerative colitis, surgery removes the colon and rectum; stool then leaves the body either through an opening on the abdomen into a bag (ileostomy) or via an internal pouch made from the small intestine that allows bowel movements in the usual way.

Living well with IBD over the long term

Long-term care is a partnership between you and your care team. Habits that make a real difference include:

• Taking medicines as prescribed, including when you feel well.
• Not smoking, which increases the risk of flare-ups in Crohn's disease.
• Avoiding anti-inflammatory painkillers such as ibuprofen unless a doctor advises them.
• Keeping vaccinations up to date; if you take medicines that suppress the immune system, ask which vaccines are suitable for you.
• Eating a balanced diet, keeping a food and symptom diary, and speaking to your team before making big changes.
• Staying active, managing stress and keeping alcohol within recommended limits.

Monitoring and complications

Serious complications are uncommon, and effective treatment lowers the risk. Possible problems include nutritional deficiencies, anaemia, weakened bones, narrowing of the bowel, fistulas and an increased risk of bowel cancer. Regular reviews help pick these up early, and people with ulcerative colitis are offered regular bowel cancer screening. Depending on your needs, your team may involve a dietitian or specialists in joints, skin or eyes.

Emotional well-being

Living with an unpredictable condition can bring stress, anxiety or low mood. These feelings are common and treatable. Tell your care team if you are struggling; talking therapies and patient support organisations can help.

Planning a family

Pregnancy is usually possible. Speak to your specialist before trying for a baby, because some medicines are not suitable during pregnancy and some can affect male fertility.

Next steps

If you have symptoms that could be due to IBD, or you are living with Crohn's disease or ulcerative colitis and would like a specialist review of your treatment, our gastroenterology team can help.

• Learn more about our gastroenterology services.
• Be matched with a suitable specialist in a few steps: Find my physician.